Follow up after treatment for bile duct cancer

After treatment for bile duct cancer, you might have regular follow up appointments. Or you may decide to only have an appointment if you have any problems or develop a new symptom.

You usually have follow up appointments with your doctor or specialist nurse (CNS).

Why you have follow up

You have follow up appointments to see how you are and if you have any problems or worries. You can talk to them about any side effects you might have from treatment, or if you have any new symptoms.

If the aim was to cure bile duct cancer, you might have follow up appointments to check for any signs of the cancer coming back.

How often are my check ups?

Whether you need check ups and how often you need them can vary, depending on your situation. It also depends on the hospital where you have had treatment. 

If you had treatment to try to cure your cancer, you might have follow up appointments every 3 months, for the first 2 years. You then might have check ups every 6 months for 3 years. 

Your doctor uses these appointments to check for signs of the cancer coming back. 

For advanced bile duct cancer, you might have check ups more regularly. Your doctor or specialist nurse may refer you to a local symptom control team or palliative care team. They see you or speak to you regularly and help you cope with symptoms. How often you see them depends on your situation. 

What happens during the appointments

Your doctor or specialist nurse usually examines you at each appointment. They ask how you are feeling, whether you have had any symptoms or side effects and if you are worried about anything.

Depending on your situation, they might look for any signs of the cancer coming back. You might have tests at some visits.

Tests include:

• a CT scan of your chest, tummy (abdomen) and the area between your hips (pelvis)
• blood tests

Blood tests help check your general health, such as how well your liver is working. Your doctor might also check for levels of CEA and CA19-9 in your blood. These can be used as tumour markers. If the levels go up it could be a sign that the cancer is growing, or has come back after surgery.

Between appointments

Many people find their check ups quite worrying. It can help to tell someone close to you how you’re feeling. Sharing your worries can mean they don’t seem so overwhelming. Your specialist nurse can also help support you and your family.

Many people find it helpful to take someone they trust to the follow up appointments. You may also find it useful to have counselling. 

You can also find people to share experiences with by using our online forum, Cancer Chat.